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radiohfan23

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Everything posted by radiohfan23

  1. Sorry to hear that. Can I ask which type you used? I'm taking the monohydrate that you drop under your tongue and not the powder... wonder if it makes any difference?
  2. Hey guys, one thing i've noticed a correlation between processed sugars (non natural) and increased anxiety. Sometimes I wake up craving sweets to the point where I feel overly compelled to get sugar. Those nights when i eat a little chocolate or candy or something I wake up constantly with palpitations and awake to horrible anxiety. I've found eating protein before bed helps me get better sleep and last through the night longer without the extreme morning anxiety (I usually hard boil an egg). And as far as Xanax I do take is sparingly and I also know that taking expired Xanax should be OK (won't be harmful), it just won't be as effective. Lieze - do you know what type of POTS you have? I'm wondering if it's Hyperadrenergic and if theres a tie between that type and the sugar/adrenaline/anxiety.
  3. I have to say that my exercise experiences are somewhat similar and I'm interested in why coffee makes you feel better. When I workout I get the same type of response, I feel relatively OK and able to do a decent amount on the recumbent bike and my HR goes to normal high ranges but it's the recovery time that’s slow and I often feel much worse the next day. Sorta feels like one step forward and two steps back... I've read that caffeine (coffee in particular) is a tolerated vasoconstrictor for some and can help counteract the pooling effects. My best guess would be that the caffeine helps to restrict the blood vessels allowing blood to more appropriately return throughout the body and help your muscles to recover. I have noticed a direct correlation with pooling and feeling at my worst. When I haven't slept well or eat a large meal and have noticeably increased pooling effects I definitely can't exercise. I don't have any experience with Adderall but am wondering how much it helps. Do you think it maybe wares off once you're finished working out and increased pooling begins again? Personally I've had some luck with creatine helping my recovery. I used to take it for years when I ran track in college and it worked wonders, but now since becoming ill I've just started at a low amount on workout days with some success in terms of my recovery time but it's still early. I also just started taking midodrine at a low dosage which seems to help me get through the day. The other thing I've looked at is exercising in the PM when possible since mornings tend to be worse for me although when I was healthy I always felt better when exercising in the mornings versus at night, so I'm not sure this makes much difference. Take care and I hope you find a solution to this quickly!
  4. I used to be a college athlete prior to developing POTS. I used creatine monohydrate to supplement my workouts and had great success with my stamina and strength improvements. I'm going to being using it again now as I begin my exercise program. Has anyone else used this and had any success?
  5. GERD was one of my first symptoms along with anxiety. Upper GI revealed reflux and a hiatal hernia. I used to wake up with acidic taste in mouth. Shortly after i began losing weight with loss of appetite. Then the POTS really set in. I still have a lot of digestive issues and nausea like most people here.
  6. Thanks for the information... I really appreciate you sharing all of this with me. I'm sure you've also realized that it does help to not be alone in this and that as backwards as it sounds it's nice to know that others have similar struggles. One question though... what is mcad?
  7. hilbiligrl Thank you so much for responding! I think i'm pretty similar to you in terms of BP readings and some of the symptoms you've noted. Any meds with me that don't work are normally a result of increased sympathetic activity. Before I discovered I have POTS I was given anti-depressants with horrific side effects. To the point where I could hardly stand, tolerate any stresses (even lights or noises) and was unable to eat. As soon as I start to feel that with any meds I just stop because it's hard enough living with POTs without compounding the worst symptoms. I'm just too weak and worn down to tolerate additional stresses. I've gotta mention (be it unrelated or not) that like most of us I have trouble sleeping with constant severe uneasiness/anxiety symptoms so I've recently started taking unisom to deal with the sleeplessness and I have to report that it's been wonderful. It puts me to sleep and I only wake up once during the night and can get back to sleep quickly and easily. Also it has helped tremendously with my appetite and nausea problems (I've lost weight as a result of POTS). I really feel it's helped decrease the sympathetic activity for me. I don't take it every night as I don't want to become dependant. And although I feel drowsyish the next day it's fine because it's a relaxed drowsiness and I'll take that over the uneasiness any day. Something to consider...
  8. Good luck with the protocol. I'm going in to get the 10 min standing test done at the end of the month. Please keep us posted on your progress and I'll eventually do the same.
  9. I just tried this myself and unfortunately had some bad side effects. However, it is because I have the hyperadregenic type of POTS I believe this medicine caused problems. I never faint and experience an increase in BP when standing. From what I've leared the meds can be a godsend for those who experience a drop in BP when standing. My bad side effects mostly involved an increase in sympathetic activity (increased adrenaline feeling, anxiety, nausea, dizzyness, etc.). The good thing was that I had read on DINET that the increase in sympathetic activity in some was a common side effect. After two doses I stopped the meds and symptoms subsided within a day. From what my Dr. told me it takes a few days to start working and a few weeks to fully set in but it can work wonders for those it helps. And yes it is meant to decrease the urination amounts. As an alternative I'm going back to taking salt tabs and have had decent results with that. Good luck, I really hope this works because in some other posts I've read it's been wonderful for many who use it. Out of curiosity do you experience syncope and a decrease in BP when standing?
  10. Funny you mention the ears... I remember a few years back that being one of my first symptoms. My ears felt full constantly and I couldn't swallow fully (lump in throat felling) and I thought it was just like an earwax buildup which I've had before. Dr. looked at it and said they were clear of wax but that I was likely experiencing allergy symptoms and post nasal drip. From what I've read and experienced personally dysautonomics feel better when my allergy symptoms are under control. I would say I have minor allergy issues compared to most I've read in the forum and over the counter meds work fine. Next time you see a doctor have him/her look into your ears, they can tell if theres post nasal drip or some wax buildup. Hopefully that's all it is because it's somewhat easily treatable once you find the right meds. For me, loratadine works fine to clear it up. I take it daily but it'd dirt cheap (I think I got a 2 month supply at Target for like $6). Another more powerful option the doctor suggested (this is before my POTS diagnosis) is sudafed but it may make you excitable and cause heart racing. I would look up sudafed in the forum as some have had good results with it, and others have not. Claratin D was also suggested but this caused heart racing and increased anxiety/adrenaline feelings so I stopped. Benadryl may be an option also and it can help with sleep. Best of luck, hopefully it's simply a treatable allergic issue.
  11. Im in the same boat as far as exercise intolerance and I like your description of how you are affraid to go shopping - I feel the same way, just can't risk getting stuck. I was at the mall walking around for about 15 minutes the other day (with occasional sitting) and then stood in line for about 3 minutes and was starting to feel panicky/faint before i was able to get through checkout and make it back to my car. As far as exercise I am going to ask my doctor about this, but I stumbled across this blog (http://www.potsrecovery.com/)in which they outline an exercise program and explain how strengthening the leg muscles and trying to exercise as tolerated in a lying or sitting position (such as a stationary bike) can help. It talks about 30 minutes every other day which to me seems like utter torture. Personally I can do about 5-10 minutes on a stationary bike (the kind where you're sitting in a recliner position) at the lowest level. Of course it takes sometimes days to "recover" and am affraid or just to exhausted to try it again so I haven't been able to stick with it. I've got an appointment with a new doctor next week (Dr. Tullo in NJ) and will see what he has to say.
  12. Hi Ida D. So sorry to hear you have not been well. There is a link on DINET (http://www.dinet.org/physicians.htm) which lists some physicians by location. What area do you live in? I'm in the northeast/Philadelphia area and may be able to offer some help if you happen to be around this area. Take care.
  13. Jonathan, I can certainly relate to the problems increasing with colder weather, or any weather changes for that sake. I log my HR changes in a database every few days or so or when i'm having particularly good or bad days and have certainly noticed the increased tachycardia when I'm in cold weather. Makes sense though (unfortunately) since the autonomic system basically controls our ability to adapt to different environments. Warm weather is tough also for me. Even warm showers always put my HR over 120 even on good days. My resting is typically 50-70 lying down. But I personally do take Xanax when I'm in situations like you are where i just can't calm my system down and it becomes just to debilitating and agonizing to tolerate. I'm about 190lbs and .25mg (the lowest dose you can get) typically does the trick for me. Because i take it sparingly i've never had any addiction issues and haven't had any problems with drowsyness the next day. If anything it does help me sleep better. Although it's obviously not any type of cure I've found it to provide a good amount of relief when I'm desperate. Hopefully the Benzo route will help calm you down and provide some much needed and deserved relief. Best of luck to you.
  14. Interesting point on the fitness. I myself was an athlete my entire life and ran track through college. I was in the process of training for a half marathon when symptoms set in and I was no longer able to run. I wonder if there is a predisposition inherent to us that provoked the onset as a result of riggorous exercise. At first when symptoms set in I felt as if I was just overworking my body and needed rest, but I never recovered and eventually got much worse.
  15. Thanks for the information firewatcher! Really good stuff. It is interesting that it's almost exclusively a caucasion issue, but as you said it's not uncommon for different races to be affected by different types of conditions. And I am also in agreement that it's certainly vastly under or missdiagnosed.
  16. Happy Birthday and well wishes!!!

  17. I've read there is perhaps a genetic correlation to dysautonomia. I myself am a 29 year old American Male (onset at 27 - slowly getting worse, no illness/lyme at onset) and of German/Irish descent (mostly Irish). I am curious as to the backgrounds of many of you out there to see whether there are any correlations. If you'd be kind enough to reply with your backgrounds along with any knowledge/theories on this I would appreciate it greatly. I would set up a poll question but fear it would exclude many nationalities. Take care everyone!
  18. Hi Sally, I am working with my doctor who has been on a neurotransmitter supplement protocol himself and was able to explain all of this. However, he's not as experienced with dysautonomia. I am taking 5-HTP which i really like (helps me sleep well) and was given Adrecor and D,L Phenylalanine also. I've noticed the tachycardia has gotten worse at times and was wondering if the Adrecor was the culpirate. Typically I have a resting HR from 60-70 supine and 90-120 standing (depending on the day). However recently my resting HR supine sometimes hits 100 (stable at 85+/-) and my standing can hit 130 when that happens (but this is only when i'm having my worst days). Have you noticed any correlation between Adrecor and increasing tachycardia? I'm hoping that i've just been having one of those random worsened episodes and it's not related to the medicine because i have heard good things from others taking Adrecor. Best wishes and so glad to hear this is working for you!
  19. I recently took a urine test to assess my neurotransmitter levels and it revealed some abnormalities. Namely my Serotonin was low but my GABA and Dopamine were elevated (these are all of the parasympathetic transmitters). On the other hand my Epinephrine and Norepinephrine were low along with PEA and Glutamate (all of which are sympathetic transmitters). Outside of the Serotonin being low it sort of runs counterintuitive to what I had presumed the test results would reveal. My best guesses are that either I'm misunderstanding or misinterpreting the results, the results are inaccurate (which can be possible with testing for neurotransmitters) or that this is somehow linked to dysautonia and POTS. My question is whether anyone else out there has had their neurotransmitters tested and knows anything more? thanks.
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